Sunday, October 31, 2010

My Reality...

Payton was born on December 6, 2001... we were told she was healthy, we were told she looked great... everything was going to be great... we were told that for several more years... and then our lives completely changed...

On May 7, 2009, Payton was diagnosed with Type 1 Diabetes*... a LIFE-LONG disease... a disease in which her body doesn't do what it is suppose to and she survives on insulin being pumped into her body... DAILY... every minute of every hour of every day...for the rest of her life or until there is a cure...

Let me tell you about Payton...
Payton is a WONDERFUL child... and everyone that has ever met her knows this... she is something special.  Payton is very loving and caring... she has an amazing ability to really listen and to be able to truly understand... she has such a wonderful spirit about her.  She is always smiling and always willing to help.  Payton loves to dance, sing and play soccer.  She loves school, playing with friends and reading.  She loves to explore new things and learn about the past.  She is always asking questions to learn more... she wants to know more and more and more.  She is so full of life... dreams... and hope....

On May 7, 2009. Payton was taken to the hospital... her fasting blood glucose was 648, her range is 80-110.  She was full of ketones.   She hadn't eaten in 12 hours... her body was so out of whack.  She was not herself, she was not my Payton.  The previous day I had picked her up from school and taken her to the doctor to see what was going on... there were numerous symptoms, of course I was thinking UTI or bladder infection... her urine was off the charts full of sugar...
The doctor at me and said "her urine is full of sugar"
Payton's response was "Mom, I didn't have candy today, I promise!"
I knew exactly what that meant... the word was not spoken in that office...
Yes, we were sent home, why I do not know...
That night while eating dinner, I told Payton that the doctor had said that she had diabetes... instantly, this look of total and complete fear came over her face and in a very solemn voice she said, "Mom, I don't want to have diabetes because I don't want to die."
It took everything within me to look at my beautiful 7 year old daughter and tell her she was NOT going to die... that we were going to figure this out.
...we made it to the next day...
We headed into the hospital at 8am for a full day of education... Payton received her 1st finger prick, 1st blood draw (3 vials), and 2 insulin shots all in the 1st hour.  Due to her high blood sugar, she was very physical and aggresive, it took 3 of us to hold her down. 

I learned how to count carbs (not sugar), give shots, check blood sugar, etc.  Once the insulin began to work and Payton started to feel "normal" she began begging to learn to give her own shots... she knew they made her feel better and she really wanted an active part in her own care.  She didn't give herself a shot until 9 months after dx, due to several factors... while sitting there learning and listening part of me died inside... the innocent childhood that I wanted for Payton was being taken away... she was going to have to always be aware of her food, her activity, her body, her sickness, everything... life would never be the same... I haven't slept well at all since that night and at this point it has been over 17 months since her dx...

In the beginning, Payton received 4-6 shots (average) of insulin a day... now she is on an insulin pump (she went "live" with her pump on her 1 year anniversary) which means she has something attached to her body 24-7 so she can get her insulin... every other day her site needs to be changed (read more about here pump here), she is also on a Continuous Glucose Monitor, which does NOT mean she checks less... it just helps with treading and the middle of the night lows she sometimes hits. (Read more about her CGM system here)  You see if Payton's blood sugar goes too low, she will die and if Payton's blood sugar goes too high, she will die.  Payton pricks her tiny fingers 8-10 times a day.  It is a constant balancing act because you can do the same thing days in a row and come up with different blood sugar amounts... EVERYTHING effects blood sugar... the weather, sleep, school, friends, family, activity, health, sickness, etc... it never ends.

I look at Payton, and I see such a wise child... made wise WAY beyond her years because of diabetes.  She will go to the grocery store and pick up snacks and say, "But Mom, it's only 15 carbs!"  You should see the looks I get from people... And though I am truly grateful that she has embraced all that diabetes has thrown in her path so far, I am also truly full of sorrow for the care-free life I wished and hoped for her.  This wasn't suppose to happen...

Parents are ALWAYS suppose to be the strong ones in EVERY situation and I know this... so when Payton was diagnosed I was very careful with my words and my thoughts...

I choose to say...
"Payton... having diabetes is just one more thing that makes you special... just like having an outie belly button."

My favorite story...
One day I was talking with someone who didn't know about Payton having Type 1 Diabetes...
When I told her... she quickly said, "I'm so sorry!"  Payton was in ear-shot.  Payton came over and simply said,"I like having diabetes because I like being different."  She then turned around and went back to riding her bike with her sister.  Diabetes does not stop Payton from doing anything!!!

As her mom, I HATE DIABETES!!!  I hate everything it stands for, everything it is, and everything it has taken away from my little girl.  Earlier this year, I went into Payton's new class to talk about diabetes and everything Payton does everyday.  While preparing for the lesson, several times I was in tears... several times while speaking to the class, I had to stop myself from crying... my little girl (no-one) should have to deal with this.  It robs you of so much...

As I became more educated on the subject (and I am always learning more)... I am amazed on how many people are mis-informed about Type 1 diabetes...
  • Type 1 diabetes can not be prevented, stopped, cured or reversed. Its an AUTOIMMUNE disease. The body (for an unknown reason) attacks the pancreas, killing off the insulin producing cells. The children AND adults with type 1 did nothing to cause the disease.... You don't grow out of it. Kids that have type 1 grow up to be adults with Type 1.
  • Its not caused by lack of exercise, fast food, candy, sugar or anything of the sort. Those with type 1 diabetes CAN have sugar (and in fact its better for them to have natural sugar rather than sugar alcohols)
  • A person with type 1 diabetes ......MUST have insulin 24/7/365 either through MDI (multiple daily injections or through an insulin pump). Even if they are not consuming food, they MUST have insulin. Weather, stress, anxiety, eating, sleeping, running, playing, and illness ALL effect the blood sugar.
  • Diabetes doesn't fit into a mold, if you do this and this, you get this for an answer.. Sorry, it doesn't work that way. You can do the same exact thing every single day, eat the same, do the same activities and sleep the same pattern and your blood sugar WILL BE DIFFERENT.
  • Parents of children with diabetes that give their children the occasional lollipop, brownie, piece of cake, soda etc are NOT abusing their children, there is no reason to call the food police. In fact, food police suck. Don't tell a person with type 1 diabetes they can't have it, because, in fact, they CAN have it.
  • A person with type 1 diabetes doesn't have the same disease as your grandmother's best friend.. its NOT treated the same as type 2 diabetes. They don't count 'sugar' they count total carbs. Doesn't matter if its an apple or a lollipop its going to effect the blood sugar the SAME WAY and needs insulin.
  • A person with Type 1 knows more about their disease than the nurse, dr, your sister or anyone else on earth. Don't tell them how to care for themselves or what to do..
If you would like to support Payton's Wish For a Cure you can join her Facebook page, here.

Did you know November is Diabetes Awareness Month?

*Type 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. In type 1 diabetes, the body does not produce insulin. Insulin is a hormone that is needed to convert sugar, starches and other food into energy needed for daily life. Only 5-10% of people with diabetes have this form of the disease.

3 comments:

  1. As a type 1 diabetic, I can tell you that I am happy to see that your daughter has taken a role in her own management! It is a testiment to your teaching and raising of her on how she is. There are a lot of kids out there that outright ignore their diabetes and get themselves into trouble down the line.
    Please don't dispair about her diagnosis though. The chances are greater than better that she will have a better life than most other people because she will be careful about what she puts into herself. That is super in my books! I know a few type 1 diabetics who were diagnosed at an early age (unlike me, I was diagnosed last march) who are the picture of perfect health.
    I personally don't look at your daughters diagnosis as stealing her childhood innocence. I look on it as empowering.
    Be well!

    ReplyDelete
  2. Payton is an amazing little girl. And from knowing you guys, it doesn't look like you are letting diabetes take over her life.

    ReplyDelete
  3. Said very well, type 1 at 20 for 29 years

    ReplyDelete